Sunday, 16 March 2014

Out of the Hole and Through the Dark Forest

I literally was on my way out the door last night to get a few hours sleep when I noticed B's heart rate (arrhythmia) was 'odd'.  I called in his Nurse and she watched the monitor, saw what I saw and then checked his heart with the stethoscope and heard what I heard.

My heart was in my throat, what now??  It wasn't happening often, just every once in awhile and I knew both the night Nurse and the Charge Nurse would watch it closely so I came home feeling so ill.  I was so far past exhausted and so sick with worry that I knew if I didn't at least lay down I was going to be useless today.

I may have called the hospital once or twice from home but I did come home and laid in a quiet bed for a few consecutive hours.  I told my husband that I hadn't heard him leave this morning and he laughed saying that we'd had a conversation...oops.  I asked what about and he said that I was wondering where I was...yup, sleep deprivation is not a good thing.

It was a rough start to the day (lots of tired Momma tears) and I spent the good part of the morning/afternoon watching B's monitor as it repeatedly beeped off 'irregular heartrate'.  As the day progress so did the frequency of the irregularities. It got to the point where his heart rate was 'normal' only a fraction of the time it was 'irregular'. His rates were jumping from 120's and down to the 80's and back up again.  When he started sitting in the 60's I got my annoyed Momma pants on and stomped my foot a bit.  No one could give me an answer to what we were looking at until we had an ECG done and no one could give me and ECG because the ward was so busy.

I was trying to be so patient as I knew that the Residents were busy but when his heart rate wasn't coming up from the 60's or 70's I was starting to really get worried (he usually sits around 120 when he's awake).  His Nurse was trying really hard to get the ECG done and tracked down the Resident we needed.

We got the leads on and she kept them on for over 5 mins trying to get the best reads.  She wasn't overly concerned but I was still very concerned, this is a very ill child with two Congential Heart Defects that has been on a tonne of drugs over the past few days. 

At the end of the ECG Dr.V actually poked her head in the room since she'd seen B was still admitted and we'd not seen her since Emerge.  All it took was a 5 min conversation with her and my stress decreased dramatically.
It's hard to get a heart rate when it's in your hands little boy

Long story short, B's 'waves and bumps' are where the need to be on the ECG but his heart rate is just in a Brachycardia state (very low heart rate).  That's the extreme opposite of what we are used to, B's usually at risk for Tachycardia for pete's sake!!  They believe the cause is from all of the hard core steroids the are administering him right now to keep his lung function up.  We've gone down to doing 5 puffs of ventolin every 2 hours now (instead of hourly) and with that difference it isn't yanking his heart rate up to balance out the steroids taking it down...something like that.

Cardiology with review it in the morning and we'll go from there.  In the meantime he's being watched.

The other main issue that we're having is that B's been unable to feed for over three days now.  We started running Pedialyte yesterday with no success and to even put meds and a flush through his g-tube is causing him discomfort.  It was suggested today that we put an NJ tube in (through the nose into the intestines) to which the Dr got a very loud 'nope' from me.  We've been there, and done that.  Not to mention the kid is maxed out on oxygen and yet we want to plug up one of his nostrils why??  They decided that we'd revisit it tomorrow and I asked for TPN to be started since we've got a decent IV. 

It took my 5 min conversation with Dr.V to get that TPN order in and started! Yay!  Within 2 hours, I kid you not, we had our B back.  He's exhausted and his lungs are still very bad but his personality was back...big Momma tears.

As I told my mother-in-law tonight, we are not out of the woods by any means but at least we're out of this huge hole for now and can start to move forward (I hope).
Rachel watching over our B

I am feeling the most relaxed that I've been in a week (which isn't saying much really) but some of that has to do with B being, well B and for the 5 hours that my friend Rachel came and just spent with me, beside me.  My children were well tended to today with Kelsey taking them on a grand adventure and for Justine for covering off time at ACH again this morning (on her other day off!).

Out of the hole and through the dark forest...

Click here to the Facebook Page for the cutest video of our B 'purring'...
Yay for TPN!

From Our Home (Unit 2) To Yours... 

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